Is this neuropathy or some other bizarre ME thing.

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But I Look So Good.

A few months ago I felt what I'll describe as a band around my ribcage just under my breasteses. I had gained some weight so I thought maybe it was from that. It was there and noticeable but nothing horrible.

About 2 weeks ago it started getting worse. When I wake it's like it was but within a few hours it feels very tight. I am not in pain. It is just there feeling like someone is pressing in.

I also have what feels like muscle aches/spasms on my back under my shoulder blades. This also moves around some, going lower and was gone for a while but just came back.

I'm not in pain. It is just tightness. When I'm up and moving around, it is much more tolerable.

It really feels like my muscles are just "cramping" or something.

Any thoughts?

Minks

Let me add that my feet are so cold it's painful. They feel like there is a band above my ankles and everything below that is cold.

UPDATE: I took Tizanidine last night (muscle relaxant) and when I woke I had no tension. But now, 2 hours later my back is in spasm.

I took some potassium to see but it did nothing. This seems to be out of nowhere. I did nothing, not really stressed.

Senior Member

@minkeygirl
I have something similar.
Initially it showed up when I was super-sick. Pain in my back - both ribcages but much stronger on the right. It can wake me up in the night but seems to go away in the day. As I write this with my morning coffee. I am aware of it but would not classify it as pain.

Yeah, so anyway....it went away and then returned right after I started the LCF. I am pretty sure that there is a link and I hope that it is a signal that there is some healing going on. Sorry to hear about the potassium. Going to get some today and see how it goes for me. Likely not too many taking as much B12 as me who have never supplemented this.

But I Look So Good.

@stridor aka Brad, Well I'm glad to know it's not some freak thing going on with me. But mine never goes away, even with muscle relaxants. I think it may be complicated by some new back spasms from stress which do go away with relaxants.

It goes all the way around my back too. When I wake the back spasms are gone but I still have that freaking band. And the Famvir I had just started exacerbated it so much I couldn't stand the pain so I had to stop it.

I"m going to talk to a massage therapist and see if it might be myofascial trigger points or who knows what. It's not painful but so annoying.

Senior Member

Big storm here today so I didn't get to buy the potassium. Later in the weekend.
LCF = l-carnitine fumerate. It was the last of freddd's protocol to fall into place and I really think that it is involved. Part of me wants to believe that since I had this particular symptom when I got ill that its return is a sign that I am passing back through on the way to recovery. Another part of me knows that is called "magical thinking".

The only thing that I can think of is potassium. Last week there were a couple of times when I started to get strange cramp/contractions going on in my toes and ankles. But not since. brad

Seven

I have tried massage, trigger point, I am with a chiro doing some sonogram therapy and some excercises and deep tissue massage, I get relieve (doesn't go away completely) but it comes back strong before the week is over.

But I Look So Good.

I spoke to a massage guy last week. He said it was myofascial trigger points. I also found out it can happen with inactivity.

I massaged this one point over my ribcage and I thought I was going to go through the roof! So I'm on to something but I don't know about wasting $90 for one massage just to have it come back in a few days.

ME/CFS since 1995; activity level 6?

I spoke to a massage guy last week. He said it was myofascial trigger points. I also found out it can happen with inactivity.

I massaged this one point over my ribcage and I thought I was going to go through the roof! So I'm on to something but I don't know about wasting $90 for one massage just to have it come back in a few days.

Senior Member

@MeSci
I had never heard of MS Hug...learned something new today. My pain doesn't meet the description either but it does seem to indirectly support that this is some form of neuralgia, or at least that is how I am seeing it now.

I think that our brains have a predisposition to certain pathways. Vertigo runs in my family and it is like a door that someone passes through. Once through it is hard to get back. Once found, the processing that produces vertigo are easier to find again. The same might be said for epilepsy, perhaps. (Don't mind me, just thinking out loud).

I had this pain when I first became ill and I had it again as referred pain following my colectomy. With any gas or pressure on where the two "pipes" were joined produced a horrible pain in the same region - 10 times worse than what I get now. Mine doesn't bother me much in the day - just some tightness, the pain is reserved for night.

It started after the carnitine was added and I am hoping that it is a sign that healing is taking place. brad

Senior Member

@minkeygirl
Yes, that's a good point. Mine is bilateral as well though 2-3 times worse on the right side. I have neurogenic itching and it is unilateral. hmmmm.....
Never tried acupuncture. The first time I had it was when I slipped into ME. Quite frankly, the pain was the least of my worries at the time. Besides, it is hard to get quality worrying in when one is fogged-in
The second time, and at times it pushed my ability to tolerate, was after the colon was removed. I correctly And, I did.
This time the symptoms started about 12 days ago and thus far have not superseded my ability to cope. I am hoping that it will be self-limited. My brain-fog has decreased and I want to think of this as part of my road to recovery. Viewed in that light, it is a lot easier to tolerate.
Now....if I am still whining about this by spring then I may be ready for acupuncture. There is a lady near here and I heard that she is good at fixing guts with this so - kill two birds with one stone???? brad

But I Look So Good.

What I just noticed is that if I pinch my skin over my ribcage it just hurts like hell. So now that is curious. There is another spot, on both sides that feels like someone is jamming a pointy finger into me.

Acupuncture is really expensive. At say $60 a pop twice a week for weeks? I can't afford it. There are some good places around her but then there is the issue of getting there on top of everything else.

I already am at my limit of coping. There is something about a constant dull ache that just eats away at your sanity.

Senior Member

@minkeygirl I know that I replied to you already but if someone reads this thread in the future I want it on record that I started a calcium product around the time that this pain returned and that I am going to withdraw it and see if there is an improvement. I will hold on the potassium idea so that I don't cloud the issue with 2 variables.

Like I hinted before, I think that this is an electrolyte problem of some kind. Ca++, K+ ....something like that. I'll get a level done as well and see if I can get - what is it a RBC potassium level that's supposed to be more accurate? brad

But I Look So Good.

@minkeygirl I know that I replied to you already but if someone reads this thread in the future I want it on record that I started a calcium product around the time that this pain returned and that I am going to withdraw it and see if there is an improvement. I will hold on the potassium idea so that I don't cloud the issue with 2 variables.

Like I hinted before, I think that this is an electrolyte problem of some kind. Ca++, K+ ....something like that. I'll get a level done as well and see if I can get - what is it a RBC potassium level that's supposed to be more accurate? brad